The other side of breast cancer Women with advanced breast cancer: meeting the unmet needs

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You might have been part of a breast cancer (BC) marathon or heard about the latest awareness campaign promoting BC screenings. Maybe you have donated money to the cause, are a family member of a survivor, or a survivor yourself.  Yet there is a high chance that there are a group of men and women living with the disease that you are not aware of – they are the “forgotten”[1] patients of metastatic breast cancer (mBC). They are a group of brave individuals who often live with feelings of isolation due to their metastatic diagnosis.  

mBC is the most advanced stage of breast cancer, [2] a stage in which the cancer has spread beyond the breasts to other parts of the body such as the bones, liver, brain and lungs.[3] In the MENA region especially, a high proportion of BC cases are diagnosed at an advanced stage.[4] Despite this, there still exists multiple misconceptions around mBC considering the lack of conversation around it compared to the attention, advocacy and policy focus on the early stages of breast cancer.[5]

The lack of awareness around mBC has left many patients feeling isolated and marginalized.[6], [7] Additionally, the diagnosis of mBC has shown to have a huge psychological and emotional impact on women and their families.[8] Many surveys, such as the Canadian Breast Cancer Networks, reflected that many patients start to experience anxiety, isolation and depression due to their diagnosis.[9] This is in addition to the high levels of fear associated with the uncertainty of the future.[10]

In fact, one of the biggest fears that women with mBC have is the impact that this disease will have on their family members, as most women with mBC are over 50 and are caregivers for children and/or other family members.[11]

However, despite the huge toll that mBC brings, it is important that we remember that it does not mean women with mBC have a negative outlook on life.[12] Rather, it is found that many patients of mBC will do everything in their power to maintain control and live a full and long life as possible.[13]

But how can we help? How can we as loved ones, supporters, advocates and policy makers help in reducing the anxiety and fear? How can we help women and men with mBC have fulfilling lives not in isolation? How do we meet the unmet needs of people living with mBC?

One of the most significant challenges ahead in addressing the needs of women and men with mBC is the need to create greater public awareness.[14] It is essential that people know mBC as the most advanced stage of breast cancer, and as different from the earlier stages of BC.[15] Heightened awareness will generate and encourage conversation along with support on how to live with mBC on a day to day basis.

Considering the cultural taboos in many countries,[16] culturally sensitive information is also important in helping women feel a greater sense of control and strength.[17] In fact, more information regarding current and future treatments and research on mBC should be readily available and encouraged within the country.[18]

Furthermore, although not all women with mBC have a negative outlook on life,[19] many women experience heightened fear, isolation and depression.[20] Hence, more resources for psychological counselling and support, including awareness on existing support services are needed.[21] Additionally better patient-doctor communication is also required to aid women in gaining a sense of higher control over their condition.[22]

Lastly, apart from knowledge around mBC, greater knowledge about the benefits and risks of treatments, along with higher investment on research on mBC are vital.[23] According to an international study only 5% of publically funded research in the United States goes towards mBC.[24]

In order to fully support and address the needs of women and men with mBC, it is essential that we continue to carry on conversations and encourage awareness around mBC. We as a community, as loved ones, as family members and as breast cancer survivors must join hands to make women with mBC feel visible and make time count.

References:

  1. Cardoso F. Metastatic breast cancer patients: the forgotten heroes! The Breast 2009; 18:271-272.
  2. Ibid.
  3. National Cancer Institute. Metastatic Cancer Fact Sheet. 2015.
  4. Alhurishi S, et al. Factors influencing late presentation for breast cancer in the Middle East: a systematic review. Asian Pacific J Cancer Prevention 2011; 121597-1600.
  5. Cardoso F. Metastatic breast cancer patients: the forgotten heroes! The Breast 2009; 18:271-272.
  6. Mayer M. Living with Breast Cancer: a global patient survey. Community Oncology 2010; 7(9):406-412.
  7. MBC Advocacy Working Group. Bridging Gaps, expanding outreach. Metastatic breast cancer Advocacy Working Group consensus Report. 2009.
  8. Perceptions of marginalization in those affected by advanced breast cancer. 2012.
  9. Canadian Breast Cancer Network and Rethink breast cancer. Metastatic Breast Cancer. The lived experience of patients and caregivers. 2013.
  10. Novartis Oncology. The invisible woman. Unveiling the impact of advanced breast cancer on women, families, society and the economy across Europe. 2014.
  11. Bridging gaps, expanding outreach- metastatic breast cancer patient survey (BRIDGE).2010.
  12. Mayer M. Living with Breast Cancer: a global patient survey. Community Oncology 2010; 7(9):406-412.
  13. Johnston S. Living with secondary breast cancer: coping with an uncertain future with unmet needs. Eur J Cancer 2010; 19:561-563.
  14. Mayer M. Living with Breast Cancer: a global patient survey. Community Oncology 2010; 7(9):406-412.
  15. ibid
  16. Taha H, Al-Qutob R, Nystrom L, Wahlstrom R, Berggren V. “Voices of fear and safety” Women’s ambivalence towards breast cancer and breast health: a qualitative study from Jordan. BMC Women’s Health 2012; 12:12.
  17. Mayer M. Lessons learned from the metastatic breast cancer community. Seminars in Oncology Nursing 2010; 26:195-202.
  18. MBC Advocacy Working Group. Bridging gaps, expanding outreach. Metastatic breast cancer advocacy working group consensus report. Breast 2009; 18:273-275.
  19. EuropaDonna. Perspectives on Advocacy for Women with Metastatic Breast Cancer: An Interim report from the EUROPA DONNA Advocacy Leader Conference. 2012.
  20. Mayer M. Living with Breast Cancer: a global patient survey. Community Oncology 2010; 7(9):406-412.
  21. Harding V, et al. ‘Being there’ for women with metastatic breast cancer: a pan-European patient survey. Br J Cancer 2013; 109:1543-1548.
  22. Sleeman J, Steeg PS. Cancer metastasis as a therapeutic target. Eur J Cancer 2010; 46:1177-1180.
  23. Mayer M. Lessons learned from the metastatic breast cancer community. Seminars in Oncology Nursing 2010; 26:195-202.
  24. Johnston S. Living with secondary breast cancer: coping with an uncertain future with unmet needs. Eur J Cancer 2010; 19:561-563.